One of the bigger news items to come out of the WFH 2014 World Congress was the announcement that WFH partners had committed to donations totaling 700 million+ IUs of treatment products (see page 10). Equally big news was that 500 million IUs, donated by Biogen Idec and Sobi, would be longer-acting and have a longer shelf life.
To understand the impact of the size and variety of the donations, one needs to step back and look at how the WFH’s Humanitarian Aid Program began in 1996.
“At the time, we were able to address emergency bleeds only,” said Assad Haffar, deputy programs director. “Our donations would be used primarily for life-threatening abdominal or inter-cranial bleeds.”
They were also used to provide concentrates for WFH development programs and support efforts by the WFH and NMOs to lobby governments for ongoing purchases of these products and sustainable hemophilia care. The donations could not be used for corrective surgery. Someone with a bleeding disorder needing corrective surgery would require an average 80,000–120,000 IUs for the surgery and subsequent support until full recovery. “That just wasn’t tenable for us at the time,” said Haffar.
“Over time, donations from corporate partners increased and sometimes came in larger assays, vials holding 3000 or 3500 IUs. When they also had a limited shelf life, they were perfect for corrective surgeries,” said Haffar.
Largest global supply channel
Since 1996, the WFH has distributed 224 million units of factor to 82 countries and is now the world’s largest supply channel of donated hemophilia treatment products. The WFH receives donated products from product manufacturers, treatment centres and homecare companies. Products are sent to registered hemophilia treatment centres or to recognized national hemophilia organizations.
Global distribution of treatment products is a massive task and involves the WFH’s extensive global network of member associations. Most donations are secured and distributed in collaboration with WFH USA and the invaluable assistance of Hemophilia of Georgia, a not-for-profit organization in the United States, and the Irish Haemophilia Society. Several corporate partners have supported the Humanitarian Aid Program over the years including Baxter, Bayer, Biotest and others.
Multi-year commitments offer a sustainable solution for predictable humanitarian aid in developing countries.
The first corporate partner to offer a multi-year donation to the WFH Humanitarian Aid Program was CSL Behring, in April 2009. The company pledged 2 million IUs of factor VIII concentrate, with a minimum one-year shelf life, over a period of three years. Six months later, Wyeth committed to 40 million IUs of recombinant factor therapy, the largest such donation in the Program’s history. And Grifols made a three-year commitment of 60 million IUs over three years. Both events set in motion a new game plan for both the WFH and its corporate partners.
Today, with a total of close to 1 billion IUs donated over multiple years, and with the donations varying from plasma-derived to recombinant therapy to new longer-acting products, governments and NMOs in need can choose from a variety of treatment options for their communities. Add to that Project Recovery and Project Wish (see page 8), and the picture becomes even more promising.
Envisaging new possibilities
From a humanitarian health care perspective, larger and predictable donations mean the WFH can envisage addressing the needs of children under five years of age as the Biogen Idec and Sobi products were designed for prophylaxis.
Haffar explained: “If we are able to administer prophylaxis to toddlers in their first two years of life, low or intermediate doses of treatment will prevent disabilities or other problems in their joints.”
This is a critical age according to Haffar, who recognizes the WFH is on new territory with this possibility.
“We are now in a position to be able to consider providing humanitarian aid for prophylaxis in children, and using this product for surgeries and acute bleeds. We will be able to reach horizons we could never reach before for children and people needing corrective surgery,” he said. “Added to what we already provide through the Humanitarian Aid Program, we have a more complete range of options to work with and offer NMOs and governments.”